This is a very very old FAQ, I believe posted by one
of the original members of Our-Kids, back in 1995. This is really not so
much a FAQ as a couple of case histories and some pertinent information
regarding the diet. The only reason this page remains is due to the large
number search hits the page still gets. For more current and relevant
information, I recommend you go to The Charlie Foundation,
http://www.charliefoundation.org/
and read about the Ketogenic Diet from that site,
http://www.charliefoundation.org/frames/diet/overview.php
Charlie is one of the first children to use the diet and his folks founded the
Charlie Foundation to provide further education and information regarding the
diet. Also, see the group at
http://health.groups.yahoo.com/group/ketogenic/

KETOGENIC
DIET FAQ:

The ketogenic diet has been
around in the medical literature for well over 70 years. It was
replaced when the modern anti-convulsants became available, even
though it has a very good success rate at controlling seizures. In
some cases it is actually better than drugs at controlling seizures.
It has a success rate of 75%. Stopping seizures in 50% and further
reducing them in 25% of cases. Most kids can stay on the diet two
years, get off it and never have another seizure again. The diet
works best in children under ten. They are less likely to cheat and
young children can maintain ketosis better than adults or older
children.

The diet mimics the effects
of starvation. it has been known for centuries that fasting has a
beneficial effects on seizure control (there is a reference to such
in the New Testament). Doctors at the Mayo Clinic came up with a way
to induce the effects of starvation (fat burning, ketosis and a
change in blood Ph levels) by feeding the patient large quantities of
fat and limiting protein and carbohydrate. the diet has to be rigidly
controlled as any deviation can throw the patient out of ketosis and
produce a seizure.

My daughter eats a diet of
75% of her calories coming from fat. Surprisingly, children on the
diet remain small and thin. There are no associated heart problems,
since the fat is all burned up and not deposited. The diet is
deficient in many vitamins and in calcium, so a good
(carbohydrate-free) vitamin supplement in essential.

TWO CASE HISTORIES:

Eliana was diagnosed with
Infantile Spasms at 6 months of age. She had not rolled over, was not
using her hands, and was becoming increasingly stiff and spastic. She
was losing the ability to hold her head up, and suffered violent
jackknife spasms. We were told that she would probably grow up
severely retarded with many physical problems.

The first drug we tried was
ACTH. Ellie became withdrawn and irritable, and stopped making eye
contact. She cried all day and all night, except while nursing. She
had fits of uncontrollable rage so bad that another customer in a
grocery store accused me of abusing her. Though the ACTH moderated
her EEG somewhat, and the seizures were somewhat less violent, they
did not decrease in frequency, and as she suffered from a half dozen
illnesses at once due to her weakened immune system, her
developmental skills dropped to nothing.

I left New Orleans and
spent 13 weeks in Los Angeles looking for answers from one of the top
researchers in infantile spasms. He put Ellie on a DOUBLE dose of
ACTH. She didn't sleep, she didn't respond to anyone, she developed
the extreme cushingoid features associated with the drug. She had
thrush so bad from the lowered immunity, that the entire inside of
her mouth, her neck and face was white with fungus. Double dosing did
not work either. We considered brain surgery, but the PET scans were
inconclusive (I can't believe we actually contemplated removing half
of my daughter's brain). We then tried Tegretol. Ellie's seizures
stopped for two months, and she began to develop, smiling again,
learning to roll over and to sit up. Then, at one year (on my older
daughter's third birthday) Ellie had a breakthrough seizure. Her
seizures rapidly climbed back up to 20 a day. We were devastated. We
experimented with dosage levels, but nothing worked.

Then someone on the
Internet's epilepsy discussion group suggested that I read _Seizures
and Epilepsy in Childhood_, which contained that wonderful chapter on
the ketogenic diet. I had seen one brief reference to the diet in a
medical paper when Ellie was first diagnosed, but when I brought it
up to my pediatrician her response was "I would never put a
growing child on this diet." End of story. But after reading the
chapter in this book from Johns Hopkins, I went to the medical
library and did some research on my own. Most of the references were
in very old neurology texts and journals, but the more I read the
more convinced I became that the diet was our answer. Felbamate was
our only other option. In December of 1993 we had an appointment with
her neurologist. She was reluctant to put her on Felbamate because
she said that it hadn't been well tested in young children. I
tentatively suggested the diet. After discussing it with her
colleagues, she told us she was very willing to give it a try.

In January of 1994, Ellie
was hospitalized to begin the diet. It took a month of fine tuning
until she had a day free of seizures. At first,(the dietician
mistakenly told us that protein did not need to be restricted, but
upon re-reading the papers we phoned our neurologist who confirmed
the error. Elimination of Tegretol also helped, because of its high
sugar content.

My parents were visiting at
the time and I remember very clearly the whole family was sitting
watching TV when my father suddenly said, "I haven't seen Ellie
have a seizure today, have you?" Not one person in the room had
seen a seizure. We watched her carefully for a few more days, but she
remained seizure-free. She has been seizure-free ever since (down
from 50 seizures per day at her worst).

Last Monday, almost a year
after starting the diet, she had an EEG. The neurologist said it was
_completely normal_! This child's EEG went from wild hypsarrythmia to
COMPLETELY NORMAL because of a diet! She is now 2.5 years old, bright
and curious, with no physical handicaps. She appears to understand
much of what we say, and is even talking. We have high hopes that she
will be able to lead a normal life, despite the dismal odds we
initially faced.

RE: CHILDHOOD SEIZURES DISORDERS DIET

'DATELINE', in its October
26, 1994 edition featured the 'Ketogenic' diet which has been used by
the world famous JOHNS HOPKINS HOSPITAL and MEDICAL SCHOOL as a
therapy for Childhood Seizure Disorders. 'Dateline' reported that
miraculous cures were obtained in a large percentage of the patients
who were placed on the high fat diet.

JOHNS HOPKINS has published
a book on the subject which is available from the following:

ALEX'S STORY:

Alex is a 3-year old boy
with an amazing head of thick, curly blonde hair. He's very tall, and
he has always appeared to be in great health.

So, when Alex developed
quick jerking seizures at the age of 10 months, even the neurologist
didn't believe he had epilepsy. He was mis-diagnosed as having
"Startle Disease"... a jerking reaction to loud sounds or
stimuli. His EEG was abnormal, but the neurologist believed Alex
could just be one of those people who has a "normally abnormal"
brainwave pattern.

However, as time went on,
Alex would continue to have this "startle reaction" even
when there was no stimulus. At that point, with the help of a
video-monitored EEG, he was re-diagnosed with myoclonic epilepsy.

To treat the epilepsy,
doctors tried every drug available. Most of them would work for two
weeks, then they would become totally ineffective. By the time we ran
out of drugs to try... Alex was having five seizures a day while on
Neurontin and Dilantin simultaneously.

In January of this year
(1995) Alex became the first patient to undergo the ketogenic diet at
Stanford. He spent five days in the hospital. Here's what happened
when he came home from the hospital:

By the second day home... he
was off all drugs.

He had a total of five
seizures in the first two weeks home... and he hasn't had one since.

He's continued to eat three
meals a day consisting mainly of fat... but "tastefully
combined" so Alex really enjoys what he eats.

For example, at breakfast
each day he has nearly an entire egg, scrambled with butter, fruit,
and cream diluted with a little water to drink.

For lunch, he loves a little
bowl of popcorn with lots of butter and five strips of bacon.

For dinner he might get a
little steak, broccoli, lettuce with mayonnaise dressing, and diluted
cream to drink.

That's a typical day of
meals for Alex... and he seems very happy. Developmentally, he's
never been better. His language slipped considerably while on all the
drugs. Now, he's talking in long, complete sentences. He's riding a
two-wheeled bike with training wheels and he's roller-blading
(kiddie-style).

The prognosis for myoclonic
epilepsy is not good. 95% of the children are retarded. However, the
diet seems to be lifting Alex out of that dismal prospect. Everyone
who knows him sees a remarkable improvement.

There is also a foundation
devoted to the dissemination of information on the Ketogenic diet and
the miraculous results that are achieved in many patients. It was
founded by the father of a boy, 'Charlie', who had excellent results
with this therapy after being almost devastated by some of the more
traditional therapies.

Thanks for your request.
Additional material on the diet include a new book, _The Epilepsy
Diet Treatment, An Introduction to the Ketogenic Diet_, written by
Dr. John Freeman, Millicent T. Kelly, R.D., L.D., and Jennifer
Freeman. The book is available through Demos Publications, 386 Park
Avenue South, New York, New York, 10016, or by calling
1-800-532-8663.

There is also a computer
program to help compute the diet developed at Hopkins. For copies,
contact the Pediatric Epilepsy Center, the Johns Hopkins Medical
Institutions, Meyer 2-147, 600 North Wolfe Street, Baltimore
Maryland, 21287-7247.

Additionally, there is a
Keto Klub newsletter, designed for parents and families on the diet.
To receive or contribute, write to Keto Klub, 61557 Miami Meadows
Court, South Bend, Indiana, 46614.